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Dying For Health Insurance: How Cancer Created An Activist

My son Michael Timothy Danforth was born on my 22nd birthday, Nov. 3, 1974. That was before sonograms, so it was a surprise when we discovered he had a serious birth defect, exstrophy of the bladder.

We went through a number of corrective surgeries with him, including one to hook his ureters into his sigmoid colon. What that meant was that he wouldn’t have to wear a urine bag. It also meant he would be at extremely high risk for colon cancer as an adult, although we didn’t find that out until he was in his mid-20’s.

Mike became addicted to drugs and alcohol in his late teens, flunked out of community college (something I didn’t know was possible) and entered a disastrous marriage. By the time he was 22, he was ready to die. He ended his marriage and then stood on a bridge, intending to jump.

But instead of ending his life, he walked away to begin a new, sober life. He spent several weeks in rehab and then became active in 12-step groups.

“I prayed a lot,” he told me later. “I told God that if he would help keep me sober I would spend the rest of my life chasing drunks.”

That’s what he did. He became a sponsor to other people who were trying to get and stay sober. No matter what, he was there for people. He remarried and a year later, and he and his wife decided to go back to school. Mike was a chef, and chefs don’t usually get health insurance. He knew he would need it, and he hoped any illnesses would hold off until he finished.

He wanted to be a legal aid lawyer to help people who couldn’t afford a good lawyer. So, they moved from Albany, NY, where Mike had been able to get colonoscopies every year, to Savannah, GA, where the doctors would only write in his records, “Patient needs a colonoscopy but can’t afford it,” three times. The fourth time, they added, “Will advise patient to go for financial counseling.”

In his junior year, he had a 3.75 GPA and a part-time job waiting tables. That’s when the stomach aches started.

Since Mike had a one-in-four chance of developing colon cancer, he knew he needed to be monitored. But he couldn’t get the colonoscopy he needed, even though he was in pain and losing weight. Weeks went on and he dropped to 112 pounds. A doctor finally agreed to do the test, but he never informed Mike that his colon was completely blocked. The record says, “Couldn’t complete colonoscopy. Next time use peds scope.”

Three weeks later, Mike finally was admitted to the hospital. He was in renal failure and vomiting fecal matter.

It took them five days to stabilize him before they could do surgery. The cancer – signet-ring adenocarcinoma – was Stage 3.

Mike went through chemo, cracking jokes about the chemo pump he wore for a week at a time. He also joked about radiation, saying he hoped it might make him glow in the dark. He finished treatment, then began vomiting again. This time the blockage was caused by radiation damage to his small intestine, and the doctors let him drop to 104 pounds before doing anything.

They found “a few viable cancer cells” and told him he was going to die. They maybe could do a little more chemo, but he should prepare for the inevitable. Although he was on the oncology floor for several days after the pathology report came back, no one from oncology came to talk to him. He got a note to call the oncology clinic in a few weeks and that was it.

I decided to do what I could to save his life and got on the phone to every cancer care center east of the Mississippi. Most said they couldn’t see him, because they already had more self-pay patients than they could handle. Finally, Dr. Herb Hurwitz at Duke University Medical Center agreed to a consultation.

Mike got there six weeks after his second surgery and Hurwitz found a serious infection in his surgical wound.

When was the last time you saw your surgeon? he asked.
A few days ago, Mike said.
What did he say about your surgical wound?
He said it’s healing slowly because I was malnourished going into surgery.

I believe the surgeon knew about the infection but decided to let it go because Mike would die soon anyway. Either that or he was incompetent. Dr. Hurwitz adopted Mike and Duke gave him state-of-the-art treatment.

Mike needed Medicaid for all the medications, and he and his wife had to separate so he could be eligible. He had been turned down twice already for SSD, so he worked part-time for awhile. Meanwhile, he was still chasing drunks and saving lives.

“I had the plastic bag on my head already when he showed up because I hadn’t answered my phone,” one friend told me.

Another friend said he could stop by at 3 a.m. and Mike would get up and talk to him.

“Mike made me a good person,” one friend said. “He wouldn’t let me go out for coffee until we did something nice for someone.”

And on and on …

Meanwhile, he began losing weight and experiencing pain again. The doctors at Duke ran scans and other tests but didn’t see any tumors so they assumed the problem must be from all the surgeries he had. By this time he had a colonostomy and two tubes that ran from his kidneys, out his back and into two urine bags, which he tucked into the pockets of his plaid flannel pajama pants when he was at home.

Finally, on Feb. 25, 2008, the doctors told him the cancer was back. They tried chemo but he kept losing weight. I brought him home to be with me so I could care for him at the end. His ex-wife and his best friend were there to help all the time.

I lost my precious child because of a system that lets people die rather than treat them. I am not alone. 45,000 Americans die every year for the same reason: a lack of access to health care.

At his memorial service, people kept walking up and hugging me and telling me how Mike had saved their lives.

“You knew when he walked into a meeting, it would be a profound experience,” one friend told me. “He was so wise.”

Mike died sober. Through all the pain and the awful treatment, he stayed sober. He never lost his twisted sense of humor or his love of life, even to the end, when he was too weak to get out of bed. The night before he died, he told me he was enjoying himself as we watched Star Trek and nibbled on dark chocolate.

He died at 4 p.m. April 1, 2008; his first disability check came nine days later. I used the back pay to pay off the debt I incurred taking care of him.

His memorial service turned into a litany of the practical jokes he had played on people. I miss those jokes. I miss cooking with him. I miss how he loved the bread I bake (“The only thing wrong with this bread is that it’s not at my house”). I miss the long discussions late into the night. I miss calling him early in the morning on our mutual birthday and both of us singing, “Happy birthday to MEEE!!” at the top of our lungs. I miss leaving silly messages on his phone.

I miss my permanent designated driver and his crazy laugh. I miss his lack of patience with stupidity and willful ignorance and bad drivers and the commercialization of Christmas. I miss having anything that broke fixed. I miss going on photography expeditions into Great Smoky Mountains National Park with him.

I think about the lives he saved and wonder how many lives might be lost because he isn’t here, all because Americans don’t want government to interfere in our health care system.

I know all too well how broken that system is. I hope those who think it’s just fine don’t have to find out the same way I did just how badly it’s broken.

Leslie Boyd, director of WNC Health Advocates, speaks during a recent Asheville forum about Medicaid expansion in North Carolina.

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Leslie

I am Leslie Boyd, founder of WNC Health Advocates and mother of our inspiration, Mike Danforth. I was a newspaper reporter for nearly 30 years before Mike died and I was compelled to move to advocacy. All my articles.

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